They hit it right on, we fight for services, there are not many in the area I live in, it is very difficult. Same with the school system. My son has had 9 hospitalizations, as recent as January – April 2011. I just had another IEP with the school system, this would be the second in a Month. The school system will do as they can get away with, therefore I hired a lawyer so they will be watched closely and made sure they know it. Those are my expenses, hospital bills, lawyers for the School system, trying to find services. NAMI is a joke for children with mental illness.

When my daughter was diagnosed with autism, both her pediatrician and a social worker told me that in most families, one of the parents has to quit work in order to take their autistic child to and from classes and therapies and to be home for parent training and intensive interaction with their child. In Maryland, the infants and toddler’s program provides 45 minutes of instruction and parent training per week per child–but it is recommended that the kids get 20-40 hours a week of intervention! Parents have to fill in the gap either by doing the interventions themselves or taking their children to classes and therapies. I asked the social worker if there were alternatives to having one parent quit working. She said,”Well, some parents hire someone to take care of and transport their child to therapies.” If your child is diagnosed with autism, and you are not rich, it is very difficult. Our insurance will pay for 6 visits to a speech therapist, but my daughter needs 1 or 2 visits to a speech therapist per week! I’m glad there is someone out there looking at the financial impact of an autism diagnosis on the family.

I have seen and heard about the nightmare’s globally families are having to find and get services and the financial support necessary. Not only do we need more autism research we also need a special committee to handle the financial support. Just working with all the therapies,dr. appts, school meetings is enough.

Another economic aspect is how caring for an autistic child affects job performance. I spend 8-10 hours a day in the office/commuting, then come home and care for an autistic teenager. My son, although severely autistic, was pretty manageable until puberty hit. Then….WHAM! At one point, he had 32 maladaptive behaviors!!!! I could not handle the stress (who could be expected to???), went into a depression (which has also been a lifelong battle for me), and it caused my performance to drop (I had always been a solid employee). It dropped to the point where, when the company decided to downsize it’s IT departments, my performance played a large part in losing my job.

Yeah…puberty was tough for us, too! Doctors wanted to treat our son as if he were schizophrenic and wanted him on all A LOT of psychotropic meds. They made him gain a lot of weight and didn’t really help him..and if your child is older, just past school age, they are not eligible for ABA THERAPY which is what is needed, so they can learn how to cope with everyday challenges. Hang in there, my son is now 21, getting help with a local agency that is geared specifically for individuals with autism and things are looking so much brighter!! :-)

Yeah…puberty was tough for us, too! Doctors wanted to treat our son as if he were schizophrenic and wanted him on A LOT of psychotropic meds. They made him gain a lot of weight and didn’t really help him..and if your child is older, just past school age, they are not eligible for ABA THERAPY which is what is needed, so they can learn how to cope with everyday challenges. Hang in there, my son is now 21, getting help with a local agency that is geared specifically for individuals with autism and things are looking so much brighter!! :-)

I am sorry to hear about your situation. Unfortunatly employers are not reconizing the stress of raising a child with autism and mental health issues you suffer because of it. I too suffer from depression and at one time was a nurse on 8 hour shifts raising my son on my own while my husband is working 6 days a week as a truck driver. Since having to leave my job nearly 1.5 years ago I have become further depressed as we are now suffering financially.

My son, Zachary, has been receiving services since Nov 2009 and I thank G-d constantly that we live in PA. Zack receives 31 hrs of intervention per week, including speech, OT, 9 hrs/wk in a developmental delayed preschool, 6 hrs of ABA, 2 hrs with a psychologist, and 13 hrs/wk of other behavioral therapies. And its all free. The services are there, it was just up to me as the parent to do the footwork and to be willing to advocate for my son. I basically had to become his case manager. As a result of this, I did stop working so I could focus on Zack and his program. We have taken a huge (I mean HUGE) financial hit, bit what other choice did we have? Best of all, its working-Zack is a different kid and he continues to make amazing progress.
Thank G-d for the Montgomery Co. Intermediate Unit and for the availability of “wraparound” services in PA!

I happen to be one of these moms, who had to quit their job at $23 per hour as a nurse . I am having trouble finding childcare now to go back to work as a lot of people just do not care for children with special needs. It is unfortunate that pretty much half of the parents are in the same dilema.

this is something i live every day and feel sadly supported by the reality of this study. fragmentation is more accurate than i can say – NO ONE can coordinate the required services and potential services along the child developmental path. some of it feels like luck and circumstance to overhear something. when mothers work (like i do) we are often out of the conversation loop that occurs outside classrooms (esp. preschool) at at some doctor’s offices. i have sacrificed not only sleep (as have others) but my ability to focus as my life and time are fragmented being a case mgr and advocate for my child across health care, school, insurance companies, with family and friends. i wish it were easier and part of my mission is to make it easier for those who follow after me. i fought medicaid for 6 months just trying to get them to agree to cover something that was reasonable. they left me hanging for months just to see if i’d walk away – which i did not. then they denied me and i told them that they wasted so much time and money denying me and would have saved money just paying for what i wanted covered BUT i understood that they did it so they could then easily deny anyone who came after me. I am also lucky that i have the ability to fight and negotiate and be resourceful where many others cannot or have no one to help them.

I am jealous of the folks who are able to have the option to quit work! I am a single mom with 3 year old twins, both of whom have autism. Quitting work is not an option for us–my girls would not have food on the table, a roof over their heads, clothes to wear, an insurance company to fight… I am fortunate to have been able to secure a wealth of services for my girls, and have extended family who have helped out with transportation and supervision, but it is very, very, hard. My personal physician wanted to take me off work due to stress, but I told her it was not an option–I am relying on Wellbutrin and Xanax instead. Keeping my fingers crossed I can hold it together enough to get them through the next few years. I have no clue what I will do once they hit puberty!

I am a single mother with two young children high functioning on the spectrum. I am fortunate in that a group of parents of developmentally challenged children decided to start a non-profit childcare facility for special needs kids in my community. Cost are prorated depending on family income levels.

If it were not for this Respite Care facility I would have had to quit my job in order to care for the kids as they were thrown out of other care facilities due to autism behaviors. Without a job my children would receive NO therapies because services are almost non-existant in my state (CO= 49th out of 50 for services). I’m not able to give them everything that they need but at least they are both getting the best I can offer.

Personally, I think we need to stop looking to the government for services & funding and start doing something about it ourselves by starting more supportive non-profits to meet our autism community needs. In my experience non-profits are far more efficient and effective than government agencies.